What's worth got to do with it? Language and the
socio-legal advancement of disability rights and
equality

Abstract

This article considers the appositeness of maintaining the
defences of 'reasonable adjustment' and 'undue burden' in
legislation relating to the rights of persons with disabilities,
and what the maintenance of these concepts with legislative
parlance demonstrates about the true status and progress of
disability rights in the United Kingdom today. This will be
illustrated by an analysis of the Equality Act 2010 and various
cases concerning the rights of people with disabilities in
relation to dignity and autonomy. The discussion is framed by an
analysis of Lord Freud's comments at a recent conference and the
disparity between the continued focus on the economics of
providing access provisions to persons with disabilities and the
emphasis of the United Nations Convention on the Rights of
Persons with Disabilities (CRPD) on the fundamental human rights
of: dignity, autonomy, recognition and participation. The article
will propose that the notions of 'reasonable adjustment' and
'undue burden' should be removed completely from legislative
vocabulary and replaced with the phrase: 'assurance of rightful
access' and how this may be achieved in practice.

1. Introduction

Lord Freud sparked massive debate with his comments at a
Conservative Party Conference fringe event that people with
certain disabilities are 'not worth the full wage.' [2] The reaction was swift
and vigorous. People began calling for his resignation,
questioning how such remarks could be made in this day and age.
Now, let us take Lord Freud's comment apart. What exactly is the
problem with it? The problem resonates from one source: that
word, worth. According to the Oxford English Dictionary worth
means: valuable; of value or use (to some end); worthy.
[3] The anger
appears to originate, justifiably, from the notion that people
with disabilities are not as 'valuable' as those without.

Calls came from all corners of the political establishment,
reiterating the legal, social and political commitment to the
rights of persons with disabilities. [4] Legislation was presented as the
shield against Lord Freud's linguistic dragon. However, on closer
inspection the shield may not be as shiny as those wielding it
may have us believe. This article will demonstrate that English
and European Disability rights legislation could be harbouring
its own linguistic cuckoo in the form of 'reasonable adjustment'
and 'undue burden'. The discussion will consider the appositeness
of continuing to conceptualise the rights of people with
disabilities in economic terms and what is reasonable or undue.
The reaction to Lord Freud's comments demonstrates that there is
dissonance between public perception and intention and human
rights legislation as it is written. It is important to consider
the way in which people with disabilities are presented and
represented by legislation and politicians and the effect that
this can have on the awareness and advancement of disability
rights. Barriers still remain and people with disabilities have
to demonstrate their economic 'worth' in order to access their
full social and economic rights. This article will first consider
the meaning of dignity by looking at different philosophical
conceptions and applying this to the various articles of the
United Nations Conventions on the Rights of Persons with
Disabilities (CRPD) [5] and Article 4(1) of the International Covenant on
Civil and Political rights, the ICCPR. [6] Next, it will consider autonomy as a
foundational concept for dignity and the difficulties that
traditional definitions can pose for people with disabilities. It
will posit that social, cultural and economic access is central
to a practicable definition of autonomy for people with
disabilities. Then it will examine the legislative guidance as to
what may be considered 'reasonable' by analysing Article 8 (4) of
Optional Protocol to the International Covenant on Economic,
Social and Cultural Rights (ICESCR), [7] and the Employment Directive, [8] Article 5 and the
Equality Act 2010. Finally, this article will propose that the
notions of 'reasonable adjustment' and 'undue burden' should be
removed completely from legislative vocabulary and replaced with
the phrase: 'assurance of rightful access' and how this may be
achieved in practice.

2.Why 'people with disabilities' and
not 'disabled people'?

This article will use the term 'people or persons with
disabilities' over the traditionally social model label 'disabled
people.' For me, social model terminology is unsuited to
discussions about rights rather than physical and practical
access because the implementation of rights and the attribution
of rights to different groups of people are two separate
processes. For example, 'Can a person who uses a wheelchair/has a
sensory impairment/psychosocial impairment get on the bus?' is
one question and focuses on the physical challenges of making
something happen. 'Should the person who uses a wheelchair/has a
sensory impairment/psychosocial impairment be able to get on the
bus?' is another question about a person's right to do something.
Now, social modelists would argue that both questions are
indicative of barriers to people with disability accessing the
bus which come from the society in which they are situated. The
first originates from inaccessible infrastructure and a lack of
universal design and the second originates from an attitudinal
barrier within society which results from a preconceived notion
of people with disabilities as something less or other. [9] I support this
understanding but I argue that the most effective way to alter
attitudes is to emphasise the commonality rather than the
difference between groups. Persons with disabilities is not
preferred in order to make an argument about the essentialism of
disability, rather it is used to avoid the past participle
completed action 'disabled' which implies a sense of stasis and
removes scope to be anything other than that. As this article is
about the push for change in terms of recognising the rights and
humanity of people with disabilities and emphasising our
commonality with others within our society rather than our
difference in order to make a statement for the substantively
equal access to our fundamental social, political and human
rights it is better that the person rather than the disability
come first. It is also the language of the CRPD which is the
international benchmark in terms of social, political and
cultural rights for people with disabilities.

3.What's worth got to do with
it?

If we return to Lord Freud's comments it is necessary to
consider the relationship between the word 'worth' and the rights
of persons with disabilities.

In terms of human rights legislation and discourse, 'worth'
takes on another form: dignity. Dignity can be a particularly
problematic concept for persons with disabilities because it has
several interpretations. For Kant, dignity results from human
beings being governed by rational nature and their ability to
regulate their behaviour based on an independent moral
code. [10]
Consequently, these acts can be said to be autonomous and it is
this autonomy that attributes dignity to human beings. [11] However, Schroeder
questions the impact of such a restrictive notion of autonomy to
ascribe dignity to those with certain medical conditions and
disabilities such as those in permanent vegetative state. [12] Under Kant's
definition, they would no longer have dignity because they would
be unable to control their own lives. This reasoning can also be
applied to those with learning difficulties who must work with
others in order to direct their lives.

In response to this, Schroeder reformulates Kant's definition
as 'dignity is an inviolable property of all human beings, which
gives the possessor the right never to be treated simply as a
means but always at the same time as an end.' [13] However, this reformulation
simply turns dignity into a label without substance because in
maintaining the Kantian vocabulary concerning ends and means,
Schroeder has simply removed the element of the Kantian
definition that she disagrees with whilst not considering what it
is that makes dignity an inviolable property of all human beings
rather than all beings. Therefore, she expresses neither Kantian,
nor theological conceptions of dignity.

However, it would appear that Schroeder aligns herself more to
a theological conception of dignity because she draws on the work
of Lee [14] and
Vautier [15] that
the Christian conception of dignity is based on the sanctity of
human life as demonstrated by religious thoughts on abortion and
suicide and the attribution of dignity in Permanent Vegetative
State PVS. Though she concedes that as a label Christian dignity
may be too wide as there are those who would identify as
Christian whilst not condemning suicide or abortion and
supporting the withdrawal of food and fluids from PVS patients.
Consequently, she settles on the term traditional Christian
dignity. [16]
However, she does not appreciate the impact of this on people
with or without disabilities who do not believe in God.

Another conception of dignity that relates to persons with
disabilities is that of Schiller, [17] who does not believe that
spontaneous, unreflexive positive behaviour lacks moral value,
rather that it demonstrates grace; the graceful person being
somebody who is able to do the right thing without internal
struggle or painful process of choice. On the one hand, this
conception prizes autonomy which is available to all because it
argues that people are not prisoners of their own inclinations
whatever those may be. However, in always being shackled to the
outer conception and representations of dignity, one is never
truly free. [18]
In the context of disability rights, Schiller's conception of
dignity is linked to heroism and tragedy. [19] Reserving the idea that disability
automatically results in suffering perpetuates the idea of the
deserving and undeserving disabled. The person with the
disability who bears their position stoically, grateful for
society's attention conforms to the image of a disabled person
and is more laudable than the person who draws attention to the
inequality of their situation and wishes to change it. This is
problematic for people with disabilities because no progress can
be made without a desire for change.

In contrast, Feinberg conceptualises dignity as an expression
of respect, [20]
although Macklin maintains that using dignity as a label in this
way is a useless and redundant concept and that similarly to Kant
the value of it originates from the recognition of
autonomy. [21]

However, Dworkin shakes the foundations of the importance of
autonomy by suggesting that moral autonomy cannot be truly
autonomous because all people are governed by the same
constraints in terms of their understanding of morality. We are
born into a society with conventions and rules which act upon us
subconsciously concerning what is morally acceptable or
not. [22]
Therefore, nobody's moral codes or decisions are autonomous
because they will always be influenced by others be it family or
those who make the law. This reasoning is of particular value to
people with disabilities because there is no barrier to people
with cognitive disabilities being considered as morally
autonomous because they receive no different or no more input in
terms of forming their moral code than a person without a
disability. If there is no difference between the autonomy of
people with disabilities and people without disabilities, and it
is autonomy that gives dignity substance and makes it meaningful,
and humans their 'worth'; there can be no question that people
with disabilities have an equal and inviolable right to dignity
and the wider rights that express it. Consequently, this
reasoning makes it untenable for the legislation, politicians and
society in general to expect persons with disabilities still to
have to justify their rights to access and participation within
parameters of not being unduly burdensome and reasonable, which
are set by people who they do not affect. This equal and
multifaceted right of dignity, autonomy, recognition and
participation have been enshrined and made active by the
ratification of the CRPD.

4. Dignity and the CRPD

The European Union (EU) ratified the United Nations
Conventions on the Rights of Persons with Disabilities (CRPD) on
the 23rd December 2010. The United Kingdom (UK)
ratified the Convention 8th June 2009 meaning that all
domestic legislation must be compliant. Consequently, this
section of the article will consider dignity and the CRPD as it
forms the backdrop for the domestic legislation which will be
discussed later. The CRPD is in line with the social model of
disability, which recognises people with disabilities as citizens
who are disabled by societal barriers. This is a significant step
forward for the citizenship rights of persons with disabilities
because originally these were viewed as of secondary importance.
Article 26 of the Charter of the Fundamental Rights of the
European Union 2000 demonstrates an attitude of these rights by
charity through the use of language such as 'recognises' and
'respects' [23] in
favour of 'enforces,' 'implements,' 'acknowledges' and
'protects'. This language presents people with disabilities as
inactive members of their societies who should not expect active
protection from discrimination. By way of contrast, the CRPD
challenges this attitude by restating the fundamental human
rights and freedoms in relation to persons with disabilities
along the centralised theme of dignity which is represented by
legislative protection of autonomy, participation and
recognition. For example, Article 10 of the CRPD [24] suggests the dignity
of persons with disabilities originates from a similar respect
for the sanctity of human rights as explored by Schroeder.
Moreover, Article 5 of the Convention demonstrates Feinberg's
believe that dignity is an expression of respect by preserving
and promoting the equality of people with disabilities to be
recognised everywhere as people before the law, which is
important because it gives people with disabilities a means of
challenging current legal frameworks concerning their rights.
Furthermore, the Convention allows us to address the problematic
area of Feinberg's conception of dignity as a label. The phrase
'people with disabilities' attributes an independent and
inclusive status to people with disabilities which enables them
to stake a claim against their rights as a recognised group
within the human rights discourse. Previously, there had been no
explicit acknowledgement within human rights legislation of the
needs of people with disabilities who were merely granted their
socio-cultural rights as people of other status in the
International Covenant on Economic, Social and Cultural rights
(ICESCR) and the International Covenant on Civil and Political
rights, the ICCPR. This independent label of people with
disabilities displaces the notion of people of other status and
establishes their identity within national conscience as a group
of proactive right holders with the attendant responsibility will
dispel the outdated image of people with disabilities as subjects
dependent on reactive charity from society in order to function
and exist.

The Convention also challenges Macklin's belief that dignity
is a redundant concept because dignity is used as a label in
Articles 8, 24, 25 and the Preamble, which do not contain any
reference to the meaning of dignity for people with disabilities,
only that it exists and should be respected. This is similarly
important to the identification of people with disabilities as a
group of right holders because this label of dignity provides an
anchor to secure the attendant rights of autonomy, social
participation and recognition, which again grounds the rights of
people with disabilities within the general human rights
discourse.

Then we come to the question of autonomy, though Dworkin has
proposed a solution to the Kantian need for moral autonomy the
Convention makes reference to other types of autonomy in Articles
8, 9 and 19 which relate to awareness raising, the right to live
independently and to participate in socio-cultural and political
life respectively. For Quinn, the denial of social experiences
through inadequate accessibility to society through a variety of
cultural avenues included in the Convention such as equal access
to transport and independent living places people at a greater
disadvantage than any cognitive impairment. [25] He acknowledges individual
parameters, which strengthens his argument because he notes that
everybody's life plan regardless of disability status is
different, which strengthens his argument because it demonstrates
his claims do not solely apply to people with
disabilities. [26]

5. Accessibility, Dignity and
Personhood

Articles 2 and 5 of the CRPD contain references to the meaning
of and the provision Reason Adjustment. Article 2 outlines that
reasonable adjustment is 'necessary and appropriate modification
and adjustments not imposing a disproportionate or undue burden.'
However, this creates a hierarchy of rights in terms of
'reasonable adjustment'. Article 9 of the CRPD concerning
accessibility, which applies to key services and means of access
such as transport, only requires 'appropriate' measures. The
dictionary defines appropriate as 'right or suitable' [27] and effective as
'producing a desired result' or 'officially coming into
operation.' [28]
The two adjectives set different thresholds for the rights that
are deemed to be more important than others. The definition of
'effective', suggests that there must be a quantifiable,
traceable programme of implementation. [29] 'Appropriate' on the other hand is
a more subjective and lower threshold for states to meet because
changes under Article 9 CRPD would only have to demonstrate the
potential for impact in certain specific circumstances.
Therefore, states may argue that they have implemented
appropriate measures to make transportation accessible if they
have implemented appropriate measures that address the needs of
people with a particular kind of disability.

Quinn's argument that autonomy within the Convention means the
ability to participate in and contribute equally within society,
makes the right to transportation an important factor in the
autonomy of people with disabilities. Autonomy is a foundational
concept of dignity, which is an inviolable right. Therefore, if
people with disabilities are denied their right to a full
autonomy as a consequence of states' failure to make
transportation accessible, it can be argued that they are also
being denied their inviolable right to dignity. Consequently,
access to transportation for people with disabilities could be
viewed as a fundamental human right meaning that the higher
threshold of effectiveness should always be applied.

6. Dignity and Reasonable
Adjustment

Like Lord Freud, reasonable adjustment came to the attention
of the public during the consideration of the duty and right of
persons with disabilities to enter the employment context.
'Reasonable adjustment' first appeared in the Employment
Directive, [30]
ensuring that people with disabilities could access employment
and training. This creates a link between the right to social and
cultural access for people with disabilities and the relationship
between rights and duties. Harré defines relationship
between rights and duties as being that one party has a duty to
another if that party has an obligation to do something for the
other. [31] The
Directive imposed a duty on people with disabilities: the duty to
work. This brings recognition that people with disabilities are
able to make useful contributions, which is a central embodiment
of the CRPD. [32]
Subsequently, there is an obligation on behalf of states to
ensure that people with disabilities are able to access their
socio-political rights in return. In this light, the concepts of
'reasonable adjustment' and 'undue burden' become unsustainable.
People with disabilities, desire no more than substantively equal
access to services but are asked to modify their expectations
within parameters defined by people without disabilities, despite
having the same duties place upon them. However, framing the
discussion of the needs and rights of people with disabilities
with this rights and duties pay-off scenario is precarious. There
are those who are unable to work due to the nature or severity of
their impairment. Consequently, it may be possible to argue that
they are not performing 'their duty' and therefore cannot expect
the attendant rights to be provided to them. The CRPD prevents
such a rationalisation. It is not framed on the basis of work and
labour, but focuses on contribution, [33] which is a fluid concept. Any
contribution made to society by people with disabilities is
fulfilment of their side of the reciprocal bargain of rights and
duties. Appreciation of social contributions is evident in that
the majority of EU countries have systems in place to support
members of society economically, whilst they make
non-economically motivated contributions. If the contributions of
all parties are recognised as equal, then the rights of all
parties must also be equally recognised.

Guidance as to what should be considered reasonable adjustment
is provided by Article 8 (4) of Optional Protocol to the
International Covenant on Economic, Social and Cultural Rights
(ICESCR). [34]

The rights of people with disabilities are considered under
the title of people of 'other status.' Despite having considered
a number of other groups in individualised states including
gender, age, colour, language. The under consideration of the
needs of people with disabilities can be used as a means of
challenging this definition of reasonable in the context of
disability. [35]

Lawson addresses concerns that an anticipatory duty to
implement 'reasonable adjustment' could be too heavy for service
providers if implementation were to occur automatically and
suddenly. [36] If
people with disabilities were truly regarded as dignified equal
rights holders, this would not be a concern as there would be no
issue as to whether customers with disabilities would use the
service any less than those without disabilities so expense would
not be an issue. She proposes that Codes of Practice could be of
assistance to people with disabilities in a wide variety of
contexts. [37]

However, continuing, unchallenged acceptance of Progressive
Realisation is problematic, as it creates uncertainty as to time
scales for both service providers and people with disabilities.
It also suggests that it is acceptable for people with
disabilities to wait to enjoy fundamental human rights.

Realistically, people with disabilities are aware that full
accessibility will not happen overnight. Consequently, formally
acknowledged Progressive Realisation does little more than create
another barrier, due to objectivity and lack of concrete,
enforced timescales. It only, guards against retrogression, so
effectively it is acceptable for the situation not to move
forward as long as it does not go backwards.

'Reasonable adjustment' and 'undue burden' should be
understood as a single, three-fold, concept, interlinked by the
translation of policy into practice. Firstly, the legislature
conceptualises disability in the abstract, individual needs are
not considered. Next, this legislation is translated by state
actors and travel companies who implement a practical response.
This profit conscious setting influences what is defined as a
'reasonable adjustment' to the service. At this stage that 'undue
burden' becomes relevant. The culmination occurs when people with
disabilities utilise the adaptions. This can include interaction
with general members of society. [38]

A literature review indicates that whilst 'reasonable
adjustment' has been praised, its limitations, particularly the
relationship between 'undue burden' have largely been ignored.
Though Quinn considers the potential redistributive effect of
'reasonable accommodation', [39] he cautions that it does not lessen the need
for a debate about access to economic and social cultural rights.
However, for me, the status of 'reasonable' accommodation is
central to this debate. 'Reasonable' in its purest form suggests
a lower threshold and implies that people with disabilities
should not expect too much. Indeed, the dictionary definition
supports this reading. 'Not making unfair demands', 'moderate in
price' and 'average'. 'Undue' also mirrors these expectations and
justifications because it is defined as being 'greater than is
reasonable or excessive.'

French and Keyess argue that the duty to accommodate the needs
of people with disabilities will always be hampered by the notion
of undue burden. The prevalence of the minority approach in
disability discrimination law, leads to people being identified
based on their differences and the disadvantages these cause in
order to access protective measures against
discrimination. [40] They rightly propose that this is problematic. It is
neither profitable nor possible to classify people in this way
due to the diverse nature of disability. Classification pits the
'protected' group against the rest of society for resources,
which may result in an insurmountable power relationship.
[41] This power
struggle for resources and involvement has been used to prevent
people with disabilities participating in society and has been
used as both overt and covert control.

Textual analysis is criticised by Paunio and
Lindroos-Hovinheimo, who argue that the multi-lingual nature of
EU legislation and case-law problematizes what can be construed
as an 'ordinary' meaning. [42] This argument is weaker in terms of concepts
rather than cases and judicial decisions. The concepts of
'reasonable adjustment' and 'undue burden' exist regardless of
language, and will have effect on citizens who live in the
country using a particular language and interpreting legislation
under that language. British Citizens are affected by EU
decisions and the frameworks, as written in English. Therefore,
the EU should not be absolved from this kind of critique because
of multilingualism, as its effects on the interpretation of legal
documents can be felt by citizens, whatever language is used to
express the concepts of 'reasonable adjustment' and 'undue
burden'.

7. Dignity of People with
Disabilities in the United Kingdom

Lord Freud's comments are indicative of the shift in attitude
at the domestic level for people with disabilities in the UK
today. The media have played a significant role in this with a
significant increase in print media between 2010-11. [43] There was a change
reported in the number of sympathetic articles concerning
disability, with
people with mental health conditions and other 'hidden' impairments
more likely to be presented as 'undeserving'. [44] However, as these findings
focused on a particular group of tabloids rather than broadsheets
the readings might have been very different had the researchers
focused on another group of newspapers?

8. The Equality Act

The Equality Act of 2010 aimed to streamline legislation
concerning equality for all members of society with protected
characteristics including age, race, gender, sexuality,
disability, religious belief, gender reassignment status and HIV
status. However, writers such as Hepple have criticised the Act
on several grounds. Firstly, although it institutes both direct
and indirect discrimination it does not allow for a person to
bring one claim which contains elements of both because it would
be unduly burdensome to business. [45] At the time of the consultation of
the Equality Act, Caroline Gooding, then the head of the
Disability Rights Commission and a key figure in the enactment of
the DDA 1995 and 2005, criticised the Act for its approach
towards disability claiming that it weakened the existing
framework. [46]
Under the new structure, companies would no longer be obliged to
publish specific equality duties relating to persons with
disabilities unless they felt it relevant to the functioning of
their business [47] which Gooding felt would make it difficult for people
with disabilities to bring cases when they had been discriminated
against. [48]
Additionally, companies were only required to publish equality
goals every four years [49] with no specific action plan as to how and when these
would be met in a separate document [50], providing that goals had been
identified and considered in another document. [51] However, Hepple praises some
of the provisions in relation to people with disabilities and
reasonable adjustment, for example, the new provisions provided
increased protection for persons with disabilities who were
treated unfavourably because of a consequence of their disability
e.g. 'because they had to use a guide dog which means that they
would not have to show that they were less favourably treated
than other dog owners, just another person.' [52] However, this type of
discrimination may be allowed if patrons of services could show
that there was a proportional means of pursuing a particular aim
such as protecting the safety of other customers. [53] However, this is as
problematic as the notions of reasonable adjustment because it
suggests that it is acceptable to prevent specifically people
with disabilities from partaking in certain activities in order
to 'protect' other people presumably those without disabilities.
This then reinforces the notion of people with disabilities as
something 'other' or strange that society must be 'prepared' for.
This contrast is heightened by the fact that there are many
barriers to people with disabilities in terms of key arenas such
as employment on an equal footing with people without
disabilities. The current legislative framework is not strong or
complete enough to allow this legitimate aim defence to go both
ways. However, Hepple does criticise the organisation of the Act
in relation to its provision around reasonable adjustment because
in order to understand what is to be considered reasonable and
when the duty arises, authorities and business owners must
consult six separate schedules to the Act. Moreover, two kinds of
duties to provide reasonable adjustments exist in the Act. Some
reasonable adjustments, such as those connected with retail, are
anticipatory where others may be reactive. [54] This is a weakness compared to the
original position under the Disability Discrimination Act (DDA)
1995 where all reasonable adjustments were anticipatory. Another
weakness highlighted by Hepple is that of a linguistic nature as
to the wording of the statutory duties under the Act which state
that those implementing it should have due regard to the need to
achieve the objectives of: eliminating discrimination,
harassment, victimisation and any other conduct prohibited by the
Act, advancement of equality of opportunity between persons who
share a relevant characteristic and persons who do not share it
and fostering good relations between persons who share a relevant
characteristic and persons who do not share it. [55] He argues that this wording
has encouraged a tick list approach which focuses on procedure
rather than outcome meaning that if an authority can show that
they are considering the equality impact of decisions then they
can move on without achieving anything. [56] He argues that it would be better
to replace 'to regard' with an obligation to "take such steps as
are necessary and proportionate for the progressive realisation
of equality." [57] However, I would argue that this change of words
would do little in the practical sense to either focus more
attention on outcomes rather than procedures or to increase
equality for persons with disabilities because the inclusion of
the word 'proportionate' which means 'correct or suitable in
size, amount, or degree when considered in relation to something
else.' [58] This
maintains the same difficulties as reasonableness for people with
disabilities as one must always assume there will come a point
where even if a measure is deemed 'necessary' to overcome the
specified disadvantage it will also be considered to be
disproportionate in relation to something else such as resources.
This means that people with disabilities will still have to
justify their access to the rights that all other members of
populations enjoy in economic terms which would not move the
discourse very far along from where it has been since the
enactment of the DDA in 1995 and over fifteen years to the
enactment of the Equality Act we should be looking to move
forward rather than standing still. Moreover, Hepple's continued
commitment to reinforcing the progressive realisation of human
rights for people with disabilities is as problematic as
Lawson's [59]
because if the rate of progressive realisation is not strictly
defined and monitored then there may be no impetus on authorities
to meet specific time frames which would mean that people with
disabilities would have to wait longer than is necessary for
their access to rights to become meaningful and real because
progressive realisation would create another legislative and
societal barrier for them to overcome. Hepple's final praises and
criticism for the Act are that it is based on the fundamental
principle that equality is an indivisible fundamental human right
and as such there can be no hierarchy or equality and also that
it recognises that true transformative equality cannot occur
until the material differences between the situations and life
chances of those with protected characteristics are addressed.
However, he notes that a weakness of the Act is that it does not
offer significant protection to those working in the private
sector which includes up to 80% of workers which could lead to
them being marginalised and discriminated against and means that
British legislation is still far behind that of Canada and South
Africa. [60]

Fletcher and O'Brien consider the impact and history of the
Disability Rights Commission (DRC) and argued that it made
significant strides forward in making The Hepple Report's concept
of reflexive or responsive regulation which is based on the
understanding that the Law can only do so much and that there
needs to be a marriage between the law and other social
institutions. [61]The Disability Agenda, which was a move away from the
previously inward focusing campaigns which were primarily
concerned with raising awareness of the DDA and the DRC, to
focusing attention on the impact of disability on other social
conditions such as low income and educational attainment in order
to promote a holistic approach to the realisation of
rights. [62] In
spite of this, criticism was levied at the DRC because some felt
that too much emphasis had been placed on the needs of and
barriers facing people with mobility and visual impairments,
rather than cognitive or psycho-social impairments. [63] Fletcher and O'Brien
also discuss the DRC's decision to embrace Business Britain, as
indicated by the fact that they won the Award of Excellence for
Services to British Businesses in 2005 and 2006. The authors
argue that this meant that they had embraced the business
community, as a 'necessary ally' rather than an 'implacable foe',
as embodied by a change in slogan to 'Making Rights a Reality',
reflecting the need for a wide range of methods to present rights
a something which is integral rather than simply enforced.
[64] Though this
pragmatism could be seen as positive if it materially changed the
lives of people with disabilities for the better; though at the
end of this article the authors claim that poverty for people
with disabilities has risen and employment figures have
fallen, [65] there
is something unpalatable about an organisation formed with the
purpose of advancing the rights of people with disabilities,
becoming so closely entangled with a sector that has dictated
their treatment and access to their rights on the grounds of
costs and profits. The employment sector has been used by
successive governments as a means of ignoring the dignity and
autonomy of people with disabilities by forcing them into
unsuitable work placements with inadequate state support and
forcing them to justify their need for this or to risk losing all
together. This has been illustrated by a fall in the number of
people receiving Access to Work payments in recent years [66] and the need for
people to undergo medical examinations to access Person
Independence Payment (PIP) [67] in order to justify that they are 'worthy' of
financial assistance from the state, which seems to be a
practical embodiment of Lord Freud's comments.

Worryingly, the need for people with disabilities to justify
their indivisible rights to dignity and autonomy has become so
apparent and linked with economics that more cases have been
progressing from the Regional Courts of Protection to the Higher
Courts in order to give firm rulings on the status of the rights
of dignity and autonomy for persons with disabilities. In the
case of Elaine McDonald [68] who as the result of a stroke in 1999 required
night-time assistance to use a commode the local council
Kensington and Chelsea decided to reduce her support from that of
a sleep-in carer for seven nights a week to providing
incontinence pads and the carer for only four nights a week in
order to save £22,000 per year. [69] Mrs McDonald took this case to the
High Court claiming that this cut in support violated her
dignity. However, the court decided that Kensington and Chelsea
Royal Borough Council were entitled to meet Mrs McDonald's needs
in a more economical way through the provision of pads. The case
then progressed to the Court of Appeal [70] where it was found that Kensington
and Chelsea had been in breach of their statutory duty to Mrs
McDonald but since the original case Mrs McDonald's care plan had
been reviewed and as such the decision to remove her night-time
care was not put into place and so it was found that she had no
substantial complaint. The case then progressed to the Supreme
Court [71] which
upheld the Council's right to amend a care plan to a cheaper
alternative but that a key consideration in this process should
be the suitability of the provision for the individual and in Mrs
McDonald's case the court found that it was. The case was then
taken to the European Court of Human Rights [72] who decided that during the
period from the 21st November 2008 to the
4th November 2009, the Council's presumption that Mrs
McDonald should use incontinence pads had interfered with her
right to respect for her family and private life under Article 8
of the European Convention of Human Rights. However, from the
4th of November onwards the Court found that as the
Council had respected its due process with regular care reviews,
it had balanced Mrs McDonald's needs with those of other
care-users in the wider community and as such the action taken
was considered proportionate and necessary in a democratic
society and her complaint failed.

The finding of the European Court is distressing and
indicative of the increasingly economic perspective onto the
rights of people with disabilities because it demonstrates that
fundamental rights such as privacy and dignity can be violated
and this be deemed acceptable by the highest courts providing
that it is proportionate, necessary and democratic. This
indicates that people with disabilities will never fully enjoy
substantively equal rights as others do until we stop weighing
them against the needs of those without disabilities who in that
particular state will never suffer this kind of basic indignity.
This therefore could institute a notion of a parallel but lesser
notion of dignity for people with disabilities compared to those
without disabilities which is based on economic rather than human
worth.

Two recent Court of Appeal cases have thrown previous
understanding of autonomy in relation to people with cognitive
impairments. [73]
P a man with a cognitive impairment was found to have been
deprived of his liberty during his placement in a supported
living house because he had no option to leave the facility. This
overturned a previous decision of the Court of Protection, that
he was not deprived of his liberty, because the extent of his
disabilities meant that he was living as 'normal' a life as was
possible. [74]
However, the Court of Appeal argued that there should not be a
higher threshold for autonomy than those without, so the fact
that he had no option to leave deprived him of his liberty
regardless of his feelings about or reasons for his placement.
The same line of reasoning was applied in P&Q, where a woman
was under constant supervision in an NHS unit, even though she
had shown no desire to go out alone. [75] The dissenting judges to the appeal
argued that Article 5 of the European Convention on Human Rights
had never been applied to those held in domestic settings.
However, Baroness Hale made the point, that:

'[...] my living arrangements are comfortable, and indeed make
my life as enjoyable as it could possibly be, should make no
difference. A gilded cage is still a cage." [76]

In as far as it is positive that people with disabilities
should not have to reach a higher threshold for autonomy than
those without. Care should be taken not to disregard the right of
a person with a disability to decide not to do
something. It could be argued that paternalistically deciding
that a person with a disability has been deprived of their
liberty in line with those of the general population, is no more
enlightened than the opposite, if that person is shown to be
happy with that situation.

9. Solutions

In order to exercise the spectre of 'worth' and justification,
rather than equality and dignity from the discussion of
disability rights implementation I would propose that the
disability movement needs to focus its activities and campaigning
on demonstrating to policy makers the negative impact of
continuing to consider access to rights in terms of reasonable or
unreasonable, due or undue burden. It would be beneficial to
promote a change in objective and wording to: the 'assurance of
rightful access.' [77] This would provide an objective and definite standard
which would create certainty. Semantically it overcomes the
shortcomings of reasonable adjustment because 'rightful' centres
the concept within the CRPD and creates accessibility as
something that cannot and should not be denied to persons with
disabilities on economic grounds, which is not possible with any
other human right. Access should be interpreted in line with
Article 9 of the CRPD to apply to all areas of society at all
times and it should be interpreted to make the duty to ensure
access anticipatory.

Change cannot occur in a resource vacuum, however the current
benefit analysis approach to what may be considered a reasonable
adjustment demonstrates the primary problem with it and its
relationship to undue burden because the current system places
the burden onto people with disabilities to prove that they are
worth the expense of the adjustment to enable their access.
Crespi offers a reinterpretation of this burden from a cost
benefit analysis to a cost vs loss benefit analysis which would
consider what society would lose in terms of input from not
having people with disabilities on a substantively equal basis
with others, rather than the cost of enabling their involvement
in monetary terms. [78] This would best embrace the idea of 'rightful access'
and be a true acknowledgement of the dignity (worth) of people
with disabilities because it would refocus attention on them as a
group who can make contribution to their societies and enrich
them in the process.

10. How might this be achieved in
practice?

Gybels considered how to fund increased access to information
technology for people with disabilities and these measures could
be applied to society more widely. [79] His first suggestion was that cost
could be borne in a similar way to those related to health and
safety which he argues are always seen as proportionate and not
an undue burden. The clarity that this provides is likely to
encourage innovation and development in terms of access
provisions in order to ensure compliance and competition within
markets. However, a weakness in this argument is that the needs
of persons with disabilities are not as readily understood and
accepted as the need for health and safety. Until the paradigm
shift of the CRPD is complete and people with disabilities can be
inconspicuous in their societies by virtue of their presence it
is unlikely that the negative impact of a failure to provide full
and effective access measures will be understood sufficiently to
draw public support.

Gybel's second argument is that general taxation could be used
to fund accessibility provisions. [80] Whilst he notes that such a scheme
would be vulnerable to changing political agendas and priorities,
he fails to consider that such a move would not dispel or address
the notions of rights by charity. People with disabilities would
still have to justify their access to rights in order to argue
for their right to claim resources from other members of
society.

A system based the current EU tax incentives for research and
development could be used to finance accessibility provisions.
[81] These
schemes offer a reduction in tax for companies' based on the
amount spent on research and development, which could be applied
to accessibility. Administratively, they are attractive because
compared to grants and loans, the size and scope of the exemption
can be altered with few changes and there is no need to alter the
amount for the running of the whole exemption scheme.
Additionally, there is compatibility with existing taxation
processes which cuts both the cost and complexity of
implementation for companies and authorities. Moreover, the
precedent for neutral drafting would mean that tax exemptions can
be applied to large and small enterprises.

Special Research and Development allowances allow companies to
deduct more than 100 per cent of their current eligible
expenditure from their taxable income. [82] This scheme is attractive to both
parties. It offers some of the advantages of Gybels'
mainstreaming and integration argument, such as increased levels
of innovation to maintain a sense of competition with
competitors, which results in increased investment, but the tax
incentive means that this is not dependent on wider public
understanding and support, as businesses will proactively lower
tax burdens.

Accelerated depreciation schemes for investments (machinery,
equipment, buildings, intangibles), [83] could be used to answer the
concerns relating to the cost of maintaining accessibility
related equipment such as lifts, automatic ramps, specially built
facilities. This measure may have the potential to accelerate
repairs as companies will know that a portion of the costs could
be reclaimed so financial concerns will be reduced improving
consistency of access.

Lastly, a tax credit based scheme would allow companies to
directly deduct a specific share of access provision expenses
from their corporate tax liabilities, which has all of the
advantages of the previous schemes. [84]

11. Conclusion

To conclude, the use of language surrounding disability and
human rights is both delicate and powerful. It has the potential
to both effect change but also to limit change, as is shown by
the notions of 'reasonable adjustment' and 'undue burden.' If
society is to truly acknowledge the real human, as opposed to
economic worth of persons with disabilities, then it is time that
the legal and political establishment looked to its own use of
language and what this reveals about the true progress and status
of disability rights and equality in the United Kingdom today. In
order achieve this it is necessary for disability rights
campaigners and awareness raising organisations to make a change
in the vocabulary used to discuss the rights of people with
disabilities should shift from notions of reasonableness and
proportion in comparison with a group in society, who at the time
at which many of the decisions are taken will not be affected by
those decisions; to notions of what is the most effective way to
ensure the provision of rightful social, political and cultural
access for people with disabilities, which emphasises and
protects their human worth, rather than focusing on economic
impact and burden.

M Lipsky, 'The role of street level Bureaucrats Conflict over
the scope and substance of public service conflict over
interactions with citizens' in (eds), Street Level Bureaucracy
Dilemmas of the individual in public services (2nd, Russell Sage
Foundation, New York 1980).

M Rosen, Dignity: Its History and Meaning (1st, Harvard
University Press, London 2012) 1-3.

Paunio and Lindroos-Hovinheimo 'Taking Language Seriously: An
Analysis of Linguistic Reasoning and Its Implications in EU Law'
(2010) 16 European Law Journal 395,
398-399.

Presentations

A Lawson, Different types of reasonable? Critical reflections
on reasonable accommodation and progressive realisation in the UN
CRPD, 3rd April 2014, Maastricht University, Equal Rights and
Accessible Environments: The UN CRPD and EU Disability Law and
Policy,
<http://mediasite.unimaas.nl/Mediasite/Play/113519bbc41f4955a102531b7776e78a1d>
accessed 4 July 2014

A V Pearson, 'Reasonable Adjustment: The Golden Goose or The
Cuckoo in the nest of equality?' (The Lancaster disability
studies conference, Lancaster University, Tuesday 9th
September 2014)

Cases

P (by his litigation friend the Official Solicitor)
(Appellant) v Cheshire West and Chester Council and another
(Respondents) P and Q (by their litigation friend, the Official
Solicitor) (Appellants) v Surrey County Council(Respondent)

R (Elaine McDonald) v Kensington & Chelsea RBC [2008]

R (on the application of McDonald) (Appellant) v Royal Borough
of Kensington and Chelsea (Respondent)

Legislation

Charter (EC) Charter of Fundamental Rights of the European
Union (2010/C 83/02) Charter outlining the rights of citizens of
the European Union [2010] OJ LC 83.

Council Directive 2000/78/EC of 27 November 2000 establishing
a general framework for equal treatment in employment and
occupation 2000/78/EC

International Covenant on Economic, Social and Cultural Rights
(EC) resolution 2200A (XXI) of Adopted and opened for signature,
ratification and accession by

United Nations Human Rights Office of the High Commissioner
for Human Rights, 'International Covenant on Economic, Social and
Cultural Rights' (United Nations Human Rights Office of the High
Commissioner for Human Rights 1996)
<http://www.ohchr.org/en/professionalinterest/pages/cescr.aspx>
accessed 31 October 2014

United Nations, 'Convention on the Rights of Persons with
Disabilities and Optional Protocol UNITED' (un.org 2009)
<http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf>
accessed 4th March 2014

United Nations, 'Convention on the Rights of Persons with
Disabilities and Optional Protocol UNITED' (un.org 2009)
<http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf>
accessed 4th March 2014

[5] All
references to the CRPD: United Nations, 'Convention on the
Rights of Persons with Disabilities and Optional Protocol
UNITED' (un.org 2009)
<http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf>
accessed 4th March 2014

[6] United
Nations Human Rights Office of the High Commissioner for
Human Rights, 'International Covenant on Economic, Social and
Cultural Rights' (United Nations Human Rights Office of the
High Commissioner for Human Rights 1996)
<http://www.ohchr.org/en/professionalinterest/pages/cescr.aspx>
accessed 31 October 2014

[7]
International Covenant on Economic, Social and Cultural
Rights (EC) resolution 2200A (XXI) of Adopted and opened for
signature, ratification and accession by General Assembly
resolution 2200A (XXI) of 16 December 1966 entry into force 3
January 1976, in accordance with article 27 [ 1966] OJ L

[8] Council
Directive 2000/78/EC of 27 November 2000 establishing a
general framework for equal treatment in employment and
occupation 2000/78/EC hereafter the Employment Directive.

[23]
Charter (EC) Charter of Fundamental Rights of the European
Union (2010/C 83/02) Charter outlining the rights of citizens
of the European Union [2010] OJ LC 83.

[24] All
references to the CRPD: United Nations, 'Convention on the
Rights of Persons with Disabilities and Optional Protocol
UNITED' (un.org 2009)
<http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf>
accessed 4th March 2014

[25] G
Quinn, Rethinking personhood: New Directions in Legal
Capacity Law & Policy. Or How to put the 'Shift' back
into 'Paradigm Shift' (1st, University of British Columbia,
Vancouver, Canada 2011) 17.

[34]
International Covenant on Economic, Social and Cultural
Rights (EC) resolution 2200A (XXI) of Adopted and opened for
signature, ratification and accession by General Assembly
resolution 2200A (XXI) of 16 December 1966 entry into force 3
January 1976, in accordance with article 27 [ 1966] OJ L

[36] A
Lawson, Different types of reasonable? Critical reflections
on reasonable accommodation and progressive realisation in
the UN CRPD, 3rd April 2014, Maastricht University, Equal
Rights and Accessible Environments: The UN CRPD and EU
Disability Law and Policy,
<http://mediasite.unimaas.nl/Mediasite/Play/113519bbc41f4955a102531b7776e78a1d>
accessed 4 July 2014

[37] A
Lawson, 'People with Psychosocial Impairments or Conditions,
Reasonable Accommodation and the Convention on the Rights of
Persons with Disabilities' [2008] Law in Context Vol. 26 62,
68.

[38] M
Lipsky, 'The role of street level Bureaucrats Conflict over
the scope and substance of public service conflict over
interactions with citizens' in (eds), Street Level
Bureaucracy Dilemmas of the individual in public services
(2nd, Russell Sage Foundation, New York 1980).

[39] G
Quinn, (2009), The UN Convention on the Rights of Persons
with Disabilities: European and Scandinavian
Perspectives, Martinus Nijhoff Publishers: Leiden and
Boston xxi

[73] P (by
his litigation friend the Official Solicitor) (Appellant) v
Cheshire West and Chester Council and another (Respondents) P
and Q (by their litigation friend, the Official Solicitor)
(Appellants) v Surrey County Council(Respondent)